This editor never even saw a tick on her. But the effects of her Lyme disease didn’t stay nearly as hidden
I reached down to try to massage it out, when my fingers stopped at something unexpected—two rubbery, pea-sized lumps an inch or so from the top of my inner thigh.
They were swollen inguinal lymph nodes, a fact I knew since a few other ones had popped up the previous summer.
Back then, my doctor assured me they were nothing to worry about—anything from a tiny cut on the leg to a nick shaving could cause them to swell up, thinking there’s an infection to fight. They eventually went away.
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So when these new ones emerged, I figured I’d just give them some time to go back down, too.
But two days later, an oval-shaped, red rash appeared in the same area. It quickly spread to the size of my hand, fingers to palm.
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I called my primary care doctor, who was able to squeeze me in for an exam later that day.
The eventual diagnosis: Lyme disease, a bacterial infection that can cause joint pain and other frustratingly non-specific, flu-like symptoms.
That was the beginning of my first-hand crash course on Lyme disease. Turns out, a lot of things most people think about Lyme are just plain wrong.
Each year, around 30,000 cases of Lyme disease—an illness transmitted by the bites of infected blacklegged ticks—are reported to the Centers for Disease Control and Prevention (CDC).
But in many cases, you’ll have no knowledge that a tick even bit you.
In fact, only 30 percent of people with Lyme disease remembered a tick bite, a 2010 study in Clinical Infectious Diseases found. And that was in Wisconsin, a Lyme-prevalent area where people would probably be on higher alert for the insects.
As for me? The possibility of a bug bite causing the rash—let alone a tick bite—never even crossed my mind.
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That’s not to say it shouldn’t have: I live in Pennsylvania, a state where about 25 percent of all Lyme cases occurred in 2014, CDC data found.
What’s more, two of my regular running courses included short sections of wooded areas, where ticks like to hang out.
But I never even saw a tick on me—scary, considering that the tick was probably attached to my skin for 36 to 48 hours, the amount of time it generally needs to transmit the Lyme bacteria, according to the CDC.
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Turns out, ticks are pretty skillful evaders: Because they like warm, moist areas, they often move to your armpits or groin—spots where they easily escape detection, especially since immature ticks can be as small as a poppy seed, says my primary care doctor, Cynthia Martin, D.O., of the Lehigh Valley Health Network.
Not only did I miss the tick bite, but I also didn’t think my rash looked like Lyme: It was just oval and red—nothing like the stereotypical “bull’s eye” often associated with the condition.
But while about 70 to 80 percent of people with Lyme disease develop some kind of rash, the bull’s eye rash, which resembles an archery target with red and white circles, is not nearly as common as you may think.
In fact, after analyzing 53 studies, researchers from Beth Israel Deaconess Medical Center concluded that only 19 percent of people with the disease in the U.S. develop a rash with the bull’s eye appearance. (Some people don’t even get any rash at all.)
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To the professional eye, though, my rash did look like Lyme: Its large, well-defined area of redness had my doctor considering Lyme from the beginning.
But it wasn’t quite that simple: Other skin conditions, especially cellulitis—an infection characterized by red swelling, where bacteria enter through breaks in the skin—can mimic the rash of Lyme.
And my other symptoms—a low-grade fever, fatigue, and swollen lymph nodes—can be indicative of either cellulitis or Lyme disease, too.
Plus, complicating my situation were two unrelated, small, healing wounds on the periphery of the rash from an injury a few weeks prior.
“Open wounds can often be a portal where bacteria can enter the skin,” says Dr. Martin.
As a result, cellulitis can develop—and my rash appeared to be a pretty strong candidate for it.
So I left the office with a diagnosis for cellulitis, but also with orders for blood work to make sure nothing else was going on, either.
One of the tests on the order was for Lyme disease.
Diagnosing Lyme isn’t exactly clear cut, so doctors use a two-tiered approach to nail it down: The first is called the enzyme-linked immunosorbent assay test, or the ELISA test.
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This test shows how many total antibodies you have for the pathogen in question, which in Lyme’s case, is a kind of bacterium called Borrelia burgdorferi, says John Aucott, M.D., the director of the Johns Hopkins Lyme Disease Clinical Research Center.
But it’s not perfect—it can produce a good chunk of false positives, meaning people show antibodies even if they are not infected with Lyme, he says. (This can be due to other infections like mono, bacterial stomach ulcers, or even autoimmune disorders like lupus.)
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So when my ELISA test came back positive, doctors had to take one more step before confirming a Lyme diagnosis: the Western Blot test.
This test looks at the antibodies your body makes to several different specific proteins of the Lyme bacteria. It weeds out most of the false positives seen with the ELISA test.
The Western Blot detects two classes of antibodies: the IgM, which appear soon after infection, and the IgG, which can take up to 4 to 6 weeks to show up.
My Western Blot came back positive for antibodies in the IgM class—showing that my infection probably occurred within a four-week period before the test, says Dr. Aucott.
My doctor prescribed the standard treatment for Lyme disease caught early—100 milligrams (mg) of an antibiotic called doxycycline twice a day for 21 days.
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I took my first dosage the night I was diagnosed. The next morning, I felt way worse than before.
My head throbbed, my stomach cramped, and my fatigue increased.
I remember consciously trying to avoid turning my head: It seemed to take way too much effort, and I also knew it would end up creating a pounding so sharp it’d leave me sick to my stomach.
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It wasn’t that my Lyme was getting worse: I learned that my symptoms might have been caused by something called the Jarisch-Herxheimer reaction, a condition which occurs in roughly 15 percent of people after taking their first antibiotic dosage for Lyme treatment, says Dr. Aucott.
It actually can be considered a good thing, since it shows your meds are working.
When the antibiotics begin to kill off the Lyme bacteria, the dead bacteria release proteins that trigger inflammation, says Dr. Aucott.
As a result, you can experience new or worsening symptoms, like fever, chills, or achiness. The reaction only lasts a few days, he says.
In my case, the first two days after I started the doxycycline were definitely the worst: Afterwards, my symptoms—minus the rash, which disappeared within a couple days of treatment— returned to pre-antibiotic levels.
This past spring and early summer, I’d been on a fitness upswing: I was lifting 5 or 6 days a week—continually adding heavier weight to my workouts—and running at least 3 to 4 miles almost every day.
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Then, by mid-July—right around the time I suspect I was bitten—I hit a wall.
Running one mile felt like 5. Weights I could easily press by myself the week before were suddenly at risk of smashing me in the face.
I even remember consciously choosing to do one exercise over another because it used a bench—and I could lie down on it after I was done for my “rest.”
I figured I might just have been pushing my body too hard, so I dialed it back a little to give it time to recover.
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But when my Lyme test came back positive, it was actually a relief to know my body was stalling for a reason.
I wasn’t alone: The exhaustion you can feel with Lyme is often much more severe than with other fatigue-causing illnesses, says Dr. Aucott. And it could come on well before the Lyme rash shows up.
That fatigue—along with the related weakness and lack of endurance— was probably my most-pressing Lyme symptom, and it stuck with me throughout most of my treatment.
The gym wasn’t the only place I felt it: My transitional stand-up desk at work remained in the sitting position. I cleared my weekends so I could fit in long naps.